The role of psychosocial factors in home dialysis care

Transcription

1 The role of psychosocial factors in home dialysis care Marta Novak, MD, PhD Jennifer Braverman, MD, FRCP(C) Psychonephrology Unit, University Health Network, Department of Psychiatry, University of Toronto, Canada Institute te of Behavioral Sciences, Semmelweis eis University, Budapest, Hungary

2 Psycho-social issues associated with CKD Depression in patients t with kidney diseases Psychosocial factors in home dialysis What can we do?

3 Chronic renal failure, End-stage renal disease a psycho-somatic disease with significant ifi renal involvement

4 Chronic renal disease (CKD) Potentially life-threatening Dialysis started only in the 60s Progressive High co-morbidity, physical dyscomfort, pain Increased mortality End-stage renal disease (ESRD) renal replacement therapies Intrusive treatment modalities High illness intrusiveness Impaired quality of life

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6 Renal replacement therapies Peritoneal dialysis Continous Ambulatory Peritoneal Dilysis (CAPD) Continous Cycler assisted Peritoneal Dialysis (CCPD) Hemodialysis In center hemodialysis Self-care hemodialysis Home hemodialysis i Nocturnal hemodialysis (home or in-center) Daily hemodialysis (home or in-center) Kidney or kidney pancreas transplantation Graft failure- back to dialysis Choosing modalities? New modalities? New challenges

7 GFR ml/min/1,73 m transplantation dialysis

8 Psychosocial challenges in chronic diseases high psychosocial burden of disease everyday adjustment to chronic disease existential - life-threatening disease: death always in the frontline coping with constant stressors- role of social support changes in social roles, intimate relationships, broken families loss of job, decreased income rehabilitation

9 Times of increased difficulties and crisis in patients with CKD Diagnosis of renal disease Threat of dialysis No linear progression Choosing modality - Initiation of dialysis Compliance with diet, fluid restrictions and dialysis Restricted lifestyle, freedom Being on transplant waiting list Transplant surgery Graft failure- back to dialysis ONGOING EXISTENTIAL ISSUES Life/death meaning of life, keeping alive etc.

10 Psychosocial issues in CKD (Vourlekis BS et al,1997) 1. Difficulties with everyday y life and treatment 2. Technical and environmental issues (financial, transport, recreation) 3. Patient t and family approach hto CKD 4. Cultural issues (society, ethnical, religious differences) 5. Social network (family, peers, caretakers) 6. Emotional, behavioral problems, psychiatric disorders 7. Work,,j job, study vocational rehabilitation

11 Psychological factors in CKD Why me, why now : anger, guilt, self-esteem Autonomy, freedom, fatalism, control, losses, grief Self-defence strategies, eg. denial Health belief system, locus of control Adaptation to illness and death: crisis, transition, acceptance, preparation Egsistential issues, meaning of life Role of spirituality, religion Social support, the biology of love The staff`s own approach to all these issues

12 Life transitions role transitions Biological (normal or illness-related): adolescence, pregnancy, aging, menopause/andropause, onset of chronic disease Social: marriage, divorce, death, school, job, child born, moving, immigration, retirement, empty nest syndrome CKD: the psychology of losses and changes

13 Psychiatric disturbances in CKD Neuropsych. disturbances, cognitive problems Delirium Dementia Anxiety, PTSD (post-traumatic stress disorder)? Depression - most common (BUT 40 % in 70 HD pts, anxiety 46 %, Cukor el al, AJKD 2008) Subclinical depression, minor depression chronic depression Suicide id withdrawal from dialysis i Sleep disorders mental health

14 DEPRESSION IN PATIENTS WITH CKD

15 Depression in medically ill patients High prevalence in cancer, neurological disorders, cardiovascular disorders? Related to the medical illness or medical therapies? Bidirectional link? Coping with medical illness Risk of suicide Compliance Predictor of relapse, outcome?

16 Types of depression Major depression Minor subclinical Chronic depression dysthymia y Adjustment disorder with depressed mood Depression often co-occurs with anxiety Depression and chronic stress

17 Criteria for major depression* Five or more of the following symptoms during the same two week period representing a change from normal Depressed mood Decreased interest or Substantial weight loss or weight pleasure gain Psychomotor retardation or Insomnia or hypersomnia agitation Feelings of worthlessness or Fatigue or loss of energy inappropriate guilt Diminished ability to think Recurrent thoughts of death or or concentrate suicide or suicide attempt * From Diagnostic and Statistical Manual of Mental Disorders, fourth edition One of these symptoms must be present

18 DEPRESSION IN CKD Most common psychiatric/psychological p y problem (likely together with anxiety) Is it a natural reaction? Overlapping symptoms with renal disease: fatigue, sleep, appetite Prevalence (Craven et al. 1987): Depressive symptoms: % Major depression 8-22 %

19 Depression in CKD Prevalence varies between 10-60% (due to different screening tools and patient selection) Correlation between depression and patient compliance in dialysed population (Kimmel, 1998) An important predictor of quality of life in patients on dialysis (Walters, 2002) Independent predictor of mortality in patients on haemodialysis (Kimmel, 2000, Drayer 2006)

20 Factors contributing to mood disorders in patients with renal disease Bio-psycho-social i model Disease-related, comorbidities, pain, dyscomfort Treatment related? Medications Biological: uremia, neurotransmitters, neurotoxins, inflammation? Psychological l issues (loss): adaptation, ti role changes, life goals, loss, uncertainty, body image, intimacy Social: relationships, job, social roles, intimacy-sex Lifestyle issues: lack of exercise and light, altered sleepwake schedule

21 Diagnosing depression in patients with CKD Depressive symptoms Screening questionnaires (BDI, CESD) Structured clinical interviews (SCID, MINI) Difficulties in renal patients: somatic symptoms (sleep, appetite, libido, fatigue) Validated instruments? (Hedayati et al,2006) Is one question enough? Who wants to get help?

22 Depression in patients on maintenance dialysis In the DOPPS (Dialysis Outcomes and Practice Patterns Study) study ( dialysis pts, multicenter) physician-diagnosed depression was 13.9% CES-D based diagnosed was 43% Antidepressant prescription was: 34.9% in patients with physician-diagnosed depr. 17.3% in patients diagnosed depr. based on CES-D Depression was associated with female gender, lower educational status, t unemployment status, t some comorbid conditions Lopes et al.; Kidney International (2004)

23 Depression and mortality in HD pts (DOPPS) RR Mortalit y 1,8 1,6 1,4 1,2 1 1,62 1,00 1, ,31 0,8 0,6 0,4 0,2 0 Not Depresse Depresse d d p=0.000 p= Adjusted for Demographics only Adjusted for Demographics & Comorbidities U P

24 QoL of depressed patients (DOPPS)* 80 Non- Depressed Δ Δ Depressed * Δ Phys. Funct. Phys. Role Pain Gen. Health Emot. Well- Emot. Role Social Funct. Energy being *All Comparisons significant at the level **A Δ 5 in QoL Scores is Clinically Meaningful Adjusted for Demographics and Comorbidities U P

25 Depression in patients on maintenance dialysis Depression is a predictor of: mortality hospitalization and withdrawal in patients on dialysis Lopes et al.; Kidney International (2004)

26 Home Dialysis Home dialysis is a unique model of care. Patients doing home dialysis function independently and are given significant responsibility when it comes to their care.

27 Barriers to Home Dialysis Fears and anxiety. Non-compliance. Patient-perceived barriers were studied through a cross-sectional survey of prevalent hemodialysis patients at the University Health Network. Cafazzo et al., Clin J Am Soc Nephrol. 2009;4:

28 Barriers to Home Dialysis Major barriers perceived by Conventional Hemodialysis patients were: lack of self-efficacy in performing the therapy lack of confidence in self-cannulation fear of burdening family members fear of a catastrophic event. Cafazzo et al., Clin J Am Soc Nephrol. 2009;4:

29 Strategies to Enhance Care at Home Expectations and fears from the patients and care providers perspectives need to be discussed openly. Targeted attention Supervision Encouragement and support

30 Targeted attention, supervision, encouragement and support Targeting isolation in home dialysis patients: Home visits during the first 6 months of therapy to monitor compliance in home dialysis patients. Follow up visits for those identified as having compliance problems. Involve a patients partner during the patients dialysis training as social support may reduce the patient s experience of burden and improve compliance. Bernadini et al., Am J Kidney Disease. 2000;35:

31 Targeted Attention Patients may need targeted attention from professional sources other than dialysis staff. This includes formal counseling or psychotherapy programs that address patients depression and/or anxiety. One such program is a psychotherapy group for patients receiving dialysis that we are conducting at the University Health Network. Baines et al., Nephron.2000:85:1-7. Howard et al., Nephrol News Issues. 1999;13:31-34.

32 Group Psychotherapy Initiative Open to home dialysis patients. Currently, we have 8 participants, all being treated with Home Hemodialysis except one. Group members share their experiences, about home dialysis with each other. Support is provided. d Discussions range from very technical aspects of patients dialysis to interpersonal problems and challenges patients receiving home dialysis face.

33 Home Dialysis Patients doing home dialysis function independently and are given significant responsibility when it comes to their care. A main goal of home dialysis is for patients to be effectively treated. Therefore, assessing the ability of patients to comply with treatment is an important part of an overall assessment on suitability to home dialysis.

34 Compliance In Patients Receiving Home Dialysis il i Peritoneal Dialysis- Based on home visit supply inventories, one study found that approximately one-third of patients on continuous ambulatory PD (CAPD) and automated PD (APD) were noncompliant, as measured by performing fewer than 90% of prescribed exchanges. Bernadini et al., Semin Dial.2000;13:

35 Compliance In Patients Receiving Home Dialysis il i An interesting multicenter study compared non-compliance with CAPD exchanges in US and Canadian patients. overall admitted rate of non-compliance-13%, 18% in the U.S. and 7% in Canada. Blake et al., American Journal of Kidney Disease. 2000;35:

36 Psychosocial Predictors In studies of HD patients, depression, perception of illness, and perceived mental health are variables that have been suggested as important mechanisms contributing to patient non-compliance. Kimmel et al., Kidney Int. 1998;54:

37 Psychosocial Predictors Another study looked at a cohort of HD and PD patients. Individuals who shortened treatment were more likely to be depressed, to be bothered by the effects of kidney disease on their daily life, and to feel little or no control over their future health. Kutner et al., Nephrol Dial Transplant. 2002;17:93-99.

38 Illness Intrusiveness Devins has shown that chronic illness and related therapies are widely experienced as intrusive in patients lives, disrupting or interfering with valued activities and lifestyles. Devins GM. Adv Ren Repl Ther.1994;1:

39 Quality of life and illness intrusiveness (G. Devins,1994) Disease related factors Control Illness intrusiveness Subjective well-being Treatment t related factors Psycho-social factors

40 Lack of Control Individuals with a chronic disease who experience a diminished sense of control often seek alternative ways to re-establish control and a sense of self mastery. Non-compliance behaviours provide one readily available way for ESRD patients to deflect the perceived intrusion of kidney disease and dialysis into their daily lives. Taylor et al., J Soc Issues. 1991;47: Kutner et al., Nephrol Dial Transplant. 2002;17:93-99.

41 Lack of Control The tension between treatment related constraints and the individual s effort to maintain a sense of autonomy has been described as a compliance-independence tight rope. Curtin et al., Semin Dial. 1997;10:52-54.

42 Depression Direct effects- depression having adverse physiological manifestations. Indirect effects- behavioural phenomena mediating the relationship between depression and outcomes. Non-compliance with treatment recommendations may be one of these behavioural mediators. Wells KB. Psychosom Med. 1995;57:

43 Why Might Depression Increase Non- Compliance? Positive expectations and beliefs in the benefits and efficacy of treatment have been shown to be essential for patient adherence (DiMatteo et al., 1993). Depression often involved a degree of hopelessness. Compliance might be difficult for a patient who holds little optimism that any action will be worthwhile.

44 Why Might Depression Increase Non- Compliance? Also research suggests the importance of support from the family and social network in a patients attempts to be compliant with medical treatments. Depression is often accompanied by considerable social isolation and withdrawal from individuals who would essential in providing support. DiMatteo et al., Arch Intern Med. 2000:160: DiMatteo MR. JAMA. 1994;271:79-83.

45 Why Might Depression Increase Non- Compliance? Depression can at times decrease cognitive functioning. This could affect a patients ability to remember and follow through with treatment recommendations. DiMatteo et al., Arch Intern Med. 2000:160:

46 Depression and Non-Compliance Recognizing g that a patient might be depressed could help a health care professional manage his/her frustration around the patients non-compliance and improve the physician/nurse-patient patient relationship. Screening for depression in patients beginning their treatment might prove to be a useful identifier of possible future non-compliance. It might suggest closer monitoring and assistance to achieve adherence. DiMatteo et al., Arch Intern Med. 2000:160:

47 What can we do to improve patient care and outcomes? I. On the system level: organizing care, resources, guidelines (see cancer care) Educational needs Patients Caregivers, family Staff Society, media

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49 What can we do to improve patient care and outcomes? II. Bio-psycho-social- social (spiritual) model of care Screening for psychological factors (mood, distress, anxiety, coping etc.) with scales Interventions on different levels Find best dialysis modality for patients Regular monitoring of distress, quality of life, self-perceived ed health and patient t satisfactions act Assess and provide support for caregivers (individual, family or grouptherapy) py)

50 What can we do to improve patient care and outcomes? III. Staff: address educational needs, group dynamics, conflicts and burnout (eg. Balint group and other supportive programs) Multidisciplinary team Interdisciplinary collaborations Interprofessional education Research in psychosocial areas

51 What can we do to improve patient care and outcomes? IV. Education: technical, emotional, communication skills, lifeskills etc. Improve social support and other important functional measures of quality of life (eg. sleep) Counselling, psychotherapies (CBT,IPT, existential, supportive): individual, couple, family, group. Facilitate normal lifesyle, sun, exercise 5-minute psychotherapy - active listening, empathy and support Address end-of-life issues, palliative care New forms of support and therapies: internetbased (chat, facebook, websites, groups), phone

52 Psychonephrology Raise awareness of psychological and psychosocial factors in nephrology Learn lessons from psychooncology

53 Thank you for your attention!

54 Prevalence of depression in patients with ESRD I. Year Patients Diagnostic tool Prevalence of depression Lowry, USA home HD DSM-III 18% BDI 47% Smith, USA HD DSM-III 5% MAACL 17% Craven, Canada HD DSM-III 8.1% major depr Hinrichsen, USA HD RDC 17.7% minor depr Kimmel, USA HD BDI Kim, Korea CAPD CESD 16 75% Walters, USA HD DIS 45% Lopes, DOPSS I, multicenter HD Wuerth, USA CAPD Physician 17.7% downhearted and blue SF % so down in the dumps SF % BDI 11 42% HDRS, DSM-IV (87% of this major depr) Watnick, USA HD at start BDI 44%

55 Prevalence of depression in patients with ESRD II. Year Patients Diagnostic tool Einwohner, USA PD ZDS Prevalence of depression 33% 6,5% major depr Lopes, DOPSS II, multicenter HD 27 Tx CESD short 10 43% Physician 13,9% 22,2% Akman, Turkey VL BDI 11 40% 31 HD 61,3% Araplasan, Turkey Tx SCID-I 50% Wuerth, USA PD BDI 11 49% Watnick, USA HD BDI 16 19% major depr Tyrrell, France HD ( 70 yrs) MADRS 60% Taskapan, Turkey HD HDRS 35% 68 HD DSM-IV Kalender, Turkey CAPD SCID-CV 26 predial 24,1% Hedayati, USA HD ICD 14,7% Wilson, Canada HD BDI-II 14 Nurse Nephrologist 38,7% 41,9% 24,2%

56 Transplantation not a cure Recurrent crisis situations (listing, wait periode, surgery, intercurrent diseases, acute and chronic rejection, etc.) Coping Emotional problems Immunsuppressive and other drugs (adherence, side effects) Existential issues, life-death-survival Family, caregiver Adaptation to new roles, new lifestyle Rehabilitation, education, work